Living with kidney disease, dialysis, and eventually transplant while also making memories of the greatest dad in the whole wide world and the marvelous adventures of two of the greatest sons in the whole wide world.

2.27.2011

Do you ever have a script for your life - something you plan for and expect and at the end of the day, nothing went as it was written?

My life is like that most of the time. I have intricate, detailed plans for my day and how it is going to go, positively, my way. Why don't the actors in my life read the script!?! I ask you!

I have a plan for dialysis, when I switch over to "real" poke-you-with-needles dialysis. I have a tech who is absolutely perfect. He's thorough, he's detailed, he's an excellent needle poker - his patients say he is virtually painless. So, he is who I planned for my attack.

He's quitting in three weeks. March 19, to be exact.

This was not in my script. No way. He was supposed to be The One. All the others are novices, and I've heard the winces and moans from their patients.

My fistula is almost "done" maturing and the nurses are chomping at the bit to get me started. Now, my plan is to hold off for another two or three years - unheard of in temporary access site legends - these sites are only supposed to last three months and mine is going on 18 months. Another 18 won't kill me, maybe.

I would like someone to apply for the replacement poker - skilled in needle control. Tall, dark, and handsome would help. This is, after all, my mini spa and I would like to carry on that image.

2.20.2011

Oh, let me count the ways I used to be a fan of Desperate Housewives. That's right - past tense. After tonight's episode, I quit.

I have watched every episode three or four times. I have bonded to Terry Hatcher, as Susan. I have related to her ever since she locked herself out of her house, stark naked. It’s something I would do. I have followed her every antic thinking how I would handle the same situation, and I have found myself thinking, when I’m in a predicament, “What would Susan do?”

And, shazam! They made Susan go on dialysis - just like me! This has got to be good, I thought. BUT - Susan is NOT doing what I do and I would be embarrassed and mortified if I acted as she is.

I am a dialysis patient. I have dialysis three times a week, for three-and-a-half hours every session. Susan has it for six hours every session and let me tell you that no dialysis patient has dialysis for six hours at a time unless they are 400 pounds, diabetic, retaining water like a fish out of water, and have several other diseases tasking their bodies for some kind of normalcy. Also, I do not enter the dialysis room and “choose” where I will sit. I do not whine to police officers that I have dialysis and therefore they should let me go. I do not complain to restaurant hostesses to move up my reservation because I have dialysis. Not to mention the very restrictive diet I am on, which includes the amount of liquid I drink, and the types of foods I eat. No cola. No oranges. No potassium. No sodium. No chocolate. I do not drink a 32 ounce cola just before I go on to dialysis. We get weighed before and after dialysis and our goal weight is deducted from our starting weight and all that extra liquid is taken off during dialysis. Also, dialysis patients don’t all sit around with a beeper for a potential kidney transplant – in fact the majority of dialysis patients have myriad other ailments that disqualify them for a transplant, which on a good day would take three to six years to get.

I am totally disgusted with the way Desperate Housewives is moving with regard to dialysis. They should be ashamed of themselves. They are giving all dialysis patients a bad name. I pride myself in having an up attitude and see that same gumption in all the patients around me. And, also, I am surrounded by people on dialysis that are far, far worse than I am – most of them are diabetics, the most common reason someone needs dialysis. Most are in wheel chairs. Most use oxygen. Most have other diseases. We are not exempt to other ailments just because we are already “serving time.”

I don't go through my life acting like dialysis is this huge albatross around my neck. It's a routine I do - I get up, brush my teeth, get dressed, bring in the paper, go to dialysis, shop at the store on my way home, and I LIVE LIFE! Susan needs to get a grip.